Day 6 - ATTITUDE ADJUSTMENT
Early yesterday morning the Respiratory team tried to extubate Redden two more times, and he failed the breathing tests necessary to take him off the tube. It was devastating to wake up to that news (I had slept a full 5 hours that night... my longest night to date) I had hung so much hope on the idea that getting him off the ventilator would strengthen him to withstand his treatments better. And after meeting with his whole team of doctors this morning we came to the painful realization...
He CAN'T get off the ventilator UNTIL we shrink the tumor.
So with shaky hands and terror in our hearts we signed the papers to get him started on chemo. And we sobbed over the chemo and we prayed over his body... 'God please, PLEASE, don't let this hurt him.'
And once it started, a peace came over us. Because we have no choice. No options. We had to trust that we were here at this hospital, with these Doctors for a reason. And we had to trust that the treatments will save him.
This afternoon a PICU nurse came by to talk to me at the request of our mutual friend. It was his day off, but he still came in to check on us. I was so touched at the gesture, and proceeded to verbal vomit all over the place as he calmly listened to me, hugged me, and offered advice for all of my questions. He reminded me of something that I needed to hear... he said 'I see kids in these rooms who are doing really well, and then their parents come in and are so upset and distraught, and I see the kids start to do worse. They pick up on your emotions and need you to be strong for them.'
My soul finally heard that.
Red needs ME to be strong for HIM.
In the midst of my angst and grief I had forgotten that crying over him was not the support he needed. He needs his Mommy. His advocate. His cheerleader. And that's when it changed for me. I saw his little heart in all of this. How frightened he must be to go from spending almost every moment of the day against my skin, to be ripped away from me and surrounded by loud beeps, tubes, and strangers poking him every hour. And when I finally opened my eyes and saw him in that way, my heart stopped focusing on just getting him off the ventilator. I started focusing on supporting his little heart so that he can take each step when he's ready.
So I pulled the chair up to his crib, and arranged my body so I could get my face up right next to him. And I just whispered my love to him. Sang him our songs. And as I sat there just BEING with him, his heart rate went from the high 160s to the 130s in just 15 minutes. His body relaxed into mine. And his little fingers closed around my hand.
And the nurses came and changed him, and he remained calm. His hand grasping mine. And when I pulled away and gave his face a kiss one side of his mouth curled into a smile.
I'm here baby... I'm here. And I'm yours, and you are mine. I'll never leave you. You are so strong my little one.
The longer we are here, the more I'm struck by the immense kindness of people that has appeared in our days, over and over again. I saw it in the nurse that sang over Redden for a long time to help him calm his anxious little body. I saw it in the parents that came up to me in the hallway, complete strangers, who grabbed my arm and said 'hey, your baby WILL be ok.' It's in the Doctors that have each sat with us for hours and just let us cry. It's the nurses that came over from the other buildings we've been in just to check on us and just say hi. It's in this website which had over 22,000 visits within 24 hours. It's in the giftbags that show up with things that I didn't know I need until I did. It's in the notes that both refuel us and help us be still. It's in the donations that have poured in at shocking speed, assuring us that our only worry is being parents to our little guys. It's in the prayers being lifted up by armies. It's in YOU.
THANK YOU.
To be honest, I felt very resistant at first to the idea of recording this time in Redden's life. A huge part of me wanted to pretend that it would just go away, and that somehow we could disappear back into normal life. But once the gravity of the situation started to sink in I realized my own delusions were not helping anyone, least of all Red. And as painful as each moment is to me, it's part of HIS story, and his story is beautiful. So we've taken a lot of pictures, even of the most painful things. Because one day I WILL hand him a book with all of this in it, and I WILL get to say 'This is your story of strength Red.'
This song for today.
Comments (28)
In tears over the beauty of the image of you bringing calmness to your little one. You're one strong mama, Beri. And you've passed that strength on to Redden. Love to you. Thank you for sharing this story.
Beautiful! Such wise words. Do remember that the only way you can be those strong parents that Redden and your other boys need is to take care of yourselves and each other so you have an abundance to give. Praying for healing and God's blessing on you all.
A mother's love is so beautiful and powerful. Sending strength and love every single day! xo
This poem has come to mind over and over again as I have thought of you and how you are recording these "ugly-beautiful" moments of his life and wonder at you and the strength you have been given in your weakness. God amazes me, and you do, too. The Hospital A year ago I fell in love with the functional ward Of a chest hospital: square cubicles in a row Plain concrete, wash basins - an art lover's woe, Not counting how the fellow in the next bed snored. But nothing whatever is by love debarred, The common and banal her heat can know. The corridor led to a stairway and below Was the inexhaustible adventure of a gravelled yard. This is what love does to things: the Rialto Bridge, The main gate that was bent by a heavy lorry, The seat at the back of a shed that was a suntrap. Naming these things is the love-act and its pledge; For we must record love's mystery without claptrap, Snatch out of time the passionate transitory. -Patrick Kavanagh
What a beautiful post. Redden IS strong, not to mention fiercely handsome. Love and prayers always.
You write so eloquently and vividly. I feel your pain and sadness. I am amazed by your strength and the strength HE gives you. So much Love for Redden and prayers the chemo and doctors work magic! xoxo
Absolutely amazing, Beri. I can't wait to see you again, and I can't wait to meet Redden!! I will continue to pray for YOUR strength for him. I'm sending up praise for all the kind people that are there with you. God's peace my friend!
Love this in all of its beautiful truth. And you are so right - Redden doesn't know that his experience is the same or different than any other 1-month old's experience. But he very aware of you - and that you are the the center of his life. So I love that you are carrying on as mother and child - whatever the circumstance. Stay strong you amazing lady!
Oh, Beri. Another beautiful post that just brings me to my knees. The love and the bond between mother and child is no joke, and you've captured that here. And I am beyond impressed with your change in perspective. Sending strength to all of you.
Beri, I am praying, praying, praying for little Redden, you and our whole family. You must be feeling all these prayers and leaning on God right now, nothing else explains how you are posting such strong encouraging words. We are all suppose to be holding you all up, but you just don't even know how inspirational your strength and reliance on God is to me right now. I already know that you are going to be able to fully claim God's promise in Philippines 4:13 "I can do everything through Him who gives me strength. " with enough extra strength to give Redden all he needs through the days ahead.
So much truth and beauty in these words. Beri and Brian it's amazing the courage you have to share your experience with everyone at such a challenging time. So wonderful that you have found the strength and energy to be there for little Red and know that your community (virtual and physical) is there for YOU the same way that you are there for your baby. As always, sending strength, love and courage your way.
Beri, I met you once at Hodge Podge to pick up the Zumba dvds I have only done once:) Whenever I saw you on the exchange I would smile because I really liked you and felt connected in a mom of 3 boys/kindred spirits kind of way. I have cried for three days for your pain and anguish. Your words are so eloquent and strong and powerful and if you didn't know it til now, incredibly moving. You have the gift of words that is producing hope and strength from the thousands of people who are reading your posts. This one in particular records an amazing shift. I wish like hell I could do something, anything that would help you and your incredible family. You and sweet baby Redden and your whole family will be in my thoughts and prayers everyday. May you find strength everyday just knowing how powerful your words are and the POSITIVITY they will bring. All my love and healing energy.
I type this with small droplets of tears on my face and a quiver in my lip. After I type this small note, I'm going go someplace and spend 5 mins in quiet room summoning prayers. These prayers don't normally come easy to me but I'm going to do this for Redden, You, Brian, Nolan, and Arlo, and for all your family and extended family trying to make sense of this. We are all with you guys-Peter
Sooo beautiful that you were able to have that special time comforting Redden. We are pray pray PRAYING!!!!
I stumbled upon your journal through a friend's Facebook post. I am so sorry that your family has been faced with such a horrible obstacle. May God comfort and strengthen your hearts in the coming days and weeks as you move forward with treatment. May He hold your family closely and heal your sweet boy. Please be assured of my family's daily prayers.
I have always admired you, Beri. You are so strong and have such a natural, loving way of being a mother. Little Red is lucky to have you and Brian and his big brothers in his corner, fighting right along side him. Much love and prayers to you all.
What a beautiful song!! Another song that you and your husband might get strength from is "Strong Enough" by Matthew West. When my son was in a near fatal car accident last year, this song was one I listened to. Please know that I am praying for you and your family especially for God's healing hand upon little Redden.
I am so thrilled of your new perspective! Not that it was my prayer....but, I prayed the past two days that he would smile at you two and let you know that it isn't all bad. I feel like in you writing about that I have heard God whisper to me...see Paula I do answer prayers...and I am in control...I have them. You are such a good mommy. I have tears streaming my cheeks....thank you for sharing your sweet little words you did with him with us. You know....God your father is sitting next to you too...singing, cheering, loving his daughter. Xo
I saw your post on MOMYS and will be praying for you all! Thank you for honestly sharing your thoughts and feelings so openly. Praise God for bringing that encouragement right when you needed it, and what an amazing change to witness as Red calmed down so quickly when you shared your peacefulness! I'm looking forward to hearing of the GREAT things in store for you and your family, and for complete healing of this brave little man.
Beri, I send you and your family hugs. I am in awe of how you have continued to find that inner strength, to be so present, so aware, and just be. It is the hardest and most bravest thing to do. You are right. He needs you, now more than ever, and your strength to calm and soothe him. I'm sure he feels you in his own infant way- no doubt, there is that indescribable bond between you two, as he lived within you for the past several month. I believe in the power and strength of the good energy of many. Redden and your family have that by your side. I live far away and I am sending Redden all my good energy today and in the days to come. Strength and Love to you.
I pray our God holds Redden in hisLoving Healing hands, that this will too pass Praying for you, Brian & your boys all to be together again very soon, In Jesus name AMEN👣♥️
Dearest B and B, Your aunt kris just passed this on to pull in the power of prayers...and believe me they are powerful! Reading your journal brought tears to my eyes yet hope...I am so amazed of the strength of love and a parents love...and I am so in awe of your words and actions that are going to be such help to redden in this very difficult time....I will share this with other parents and hopefully help surround you all with positive energy,strength and prayers for healing for sweet baby redden, who is so handsome and so strong, and so blessed to have the love and support of a wonderful family! God bless, and know you are in so many thoughts and prayers,xoxo Diane Katsikas
Beri, you are one amazing mama. I know Redden loves your smile and the joy in your voice, just like everyone else around you does! If your voice ever needs a break, please let me know and I would love to come and sing to Redden.
Your writing is so transparent, Beri, and it's bringing me right there with you. Thank you for speaking through your darkest days and sharing the light that is coming in. We are praying!!!
Crying, again. Wonderful. Just wonderful. Love you, guys.
I pray that with every tear that falls for you that you will become stronger and that Red will be able to win the fight inside him
Amazing. Whenever I allow myself to underestimate the power of love, I am going to think of Redden's sweet, perfect heartbeat.